To Share or Not to Share…
I find myself at a crossroads. Do I throw my shovel back in the car and scrap this whole blog thing to try to protect myself from the internet? Do I dig in carefully and try to not disrupt the major pipelines below? Do I get an excavator and create a geyser like Old Faithful in my front yard? I honestly don’t know. I am guessing I won’t know the answer for a few years. In reality I want it all but I also know that is not how life works. I may have to create a geyser to find a cure for my son and hope that I don’t ruin too many things with the flood in the process.
In the world we live in with access to so much “stuff” and my freakish fear of AI (one day my toaster is going to come alive and attack me… haven’t you seen Mitchells vs the Machines) I hesitate to post anything about our family, particularly my kids. When Facebook started it was a way for my friends and family to “watch” my kids grow up in a seemingly safe way. Fast forward to now and social media has morphed into a whole new beast. Call me old, but I worry about what it is now and therefore try to keep my family off of it as much as possible. I am saddened by what we have lost but more fearful of what we are moving towards.
As a result, I have become a fairly private person online except for this blog. Being silent won’t find a cure for my son. With that said, I have chosen to keep his name and image off of this blog. He has a story that is different than mine and if he chooses to share that one day he can. We have a rule in our house that you don’t get to tell someone else’s story. It is their story - not your’s. But stories are what make us human. They are what connect us and compel us to make a change or fight for something or someone. And if I want my son to have a cure for his disease I have to fight for change, which means sharing my story even if it makes me uncomfortable. Mom’s before me fought for their children with CF by telling their stories (65 Roses) and so I will continue to do the same. I will try to be as honest as I can but I know that with that honesty will come judgment and some regret. How much do I share? How much will it take to find a cure for my son? I have no idea… but I have to keep trying. I owe it to him to not give up and hope that one day this blog won’t matter because a cure has been found.